Words

I’m sitting with a group of people, not a huge group, but maybe 4 or 5 others. We’re chattering, or at least, they are – they’re chatting, talking, conversing. I’m listening, I have no other choice.

I hear a door open and shut. I hear their breathing. I hear the girl across from me shift from side to side. I hear their Words, and each Word means something, makes me think of something else. I put the Words into my brain, and try to organize them. Sometimes I even hear the sentences, but there’s so much going on that I have trouble figuring out what is being said.

I hear their Words, fumbled and confusing, with most things unspoken, nonverbal cues that are not Heard. I miss a Word, and lose the sentence.

Was that a joke? They’re all laughing. I guess I should join in, since they know I’m listening, and I don’t want them to think I’m stupid. I’m not stupid. I’m smarter than all of them. But I’m a beat late. The sound of my laugh is wrong, different from theirs, and they stare. I try to unravel what was said in the moments before the laugh – the laugh is a verbal pause, there’s a chance for me to catch up on what is being talked about, I know there is.

But they’ve already started up again, and I’ve lost my train of thought. But it sounds like they’ve switched topics, so I listen. Maybe this is something I know about.

Oh yes I hear a Word. They’re talking about dogs. I don’t like dogs, I got attacked by one when I was 3. Dogs are scary. Maybe that would be something interesting to say. Someone else just said they don’t like dogs, I can agree with them. That is an appropriate thing to say. OK, now what should I say?

*Bang* a door is shut down the hallway. I jump. I wasn’t expecting it. There’s some laughter. What were they saying? Oh yeah, dogs. I hate dogs, I got attacked by one when I was 3. Plus they bark and make me jump, just like the door just did.

Yes, I finally have something meaningful to add to the conversation, but what Words should I use? I shouldn’t say ‘hate’, I was taught not to hate things but ‘dislike’ is a good Word. Ok, so I’ll say ‘I dislike dogs. I got attacked by one when I was 3. Plus they jump and bark and it’s scary’.

No, ‘scary’ isn’t the right word. I’m not scared of dogs anymore. But they startle me all the time whenever they do their doggy things. Plus it’s hard to say ‘dislike’ in my head, I can’t wrap my brain around it. How about ‘startles’? Ok, ‘startles’ is good. So I’ll say ‘I don’t like dogs. I got attacked by one when I was 3. Plus they jump and bark and it startles me.’

OK, now I’m waiting for a pause in the conversation. I know it’s rude to interrupt, I’ve been taught that since I could understand English, so I wait, even though I’m burning to say the Words. I’m practicing my sentence, trying to keep hold of those Words.

I can’t do anything else, not even listen to their speech, except repeat my sentences over in my head so that I don’t lose the Words. Practice until I’ve said them aloud, or else they’ll leave again. Keep my mouth moist, use my hands to tap out the pattern the Words make. Practice my sentence in my head. I rock a little, just to calm down. I can’t lose those words again.

Ok, there’s a pause, the pause I have been waiting for. It’s my turn. Ready? Go!

“I don’t like dogs. I got attacked by one when I was 3…”

YES, I got the first few Words out, and now I can finish my sentence. They all turn to look at me. They have that look most people give me when I speak, between surprise and annoyance. There’s more silence. And glares. The conversation must have moved on while I was sorting out the Words. But I can’t stop.

“… Plus they bark and jump and that startles me” I finish up.

There’s a pause, but not a very long one, and then they just start up again. They’ve completely ignored it. So I say it again, a little louder.

“I don’t like dogs. I got attacked by one when I was 3. Plus they bark and jump and that startles me.”

That’s when the conversation stops, and they tell me how they don’t care, they heard me the first time, and how it’s rude to say such things about dogs when one of the people just got one. Then it’s back to whatever they were saying before. I swallow down the urge to repeat my Sentence, head down, fingers twining.

I’ve put so much thought and effort into those Words, is it any small wonder that when I finally have something to say, I want to make it heard?

I can still border on this when I DO get to choose what group I am hanging out with. It’s just basically groups being too much in general. Lots of people who seem to like you, when you talk to them one on one will totally ignore you in a group. I guess they think “Oh, she’s just quiet” so it never occurs to them how left out you feel.

I just came upon your blog through “The Thinking Person’s Guide”. Thank you for sharing your experiences so beautifully.

I only hope my little boy, who is ASD, grows up being able to express himself as well. And that he is able to live and function independently. It’s so hard to know how much to push and how much to nurture, though truly, I guess they’re the same thing. I hope we’re doing right by him.

Thank you for writing this, it explains my son. When I talk about something a lot of times he will take one word in the conversation and make a comment about something relating to that word. Usually I am not talking about anything close to what he comes up with. Now I realize he is listening the best he can. Thanks again.

[…] said during the case, and attempt to come to a decision. NO WAY could I function in that situation. I can barely discuss things I know about in groups of 3-5 people who I am familiar with! 12 strangers, an extremely stressful situation, all new, conflicting information? Well if I […]

Hi E, my name is Richard. You made a comment on a blog about my daughter Emma at emmashopebook.com. Anyway, I just read this and it’s not only one of the most moving and intense posts I’ve ever read, but the writing is just staggeringly great. I’ve often wondered what Emma experiences when she listens to a group of adults talking, or other kids her own age. I’ve often suspected that it’s very chaotic and difficult to process, even though her receptive language skills are more developed than her expressive skills. I’m sure she understands many of the words, maybe even the gist of what is being discussed, but I’ve often wondered that the speed of conversation is overwhelming for her. The way you talk about the Words was so evocative, Words as sounds with meaning. When you talk about trying to hang onto the words you’re practicing so you can participate in the conversation, and you encounter such ridicule when you make your statement, it’s just so sad that people are so cruel, and lack any empathy, and yet they never question their own behavior. I think it’s very clear where the ‘disorder’ lies and it is most certainly not with you. I really hope you write a book about your thoughts and experiences. The world needs to hear a voice like yours, so eloquent, so passionate, so poignant, with so much to say. Parents with ASD children need to hear this as much as your peers. And those others in the dorm — this should be posted on the wall. Thanks so much.

Hi Richard,
Thanks so much for stopping by my blog, and for your incredibly kind words. I actually find it easier to communicate with people older than me (a topic that is in a half-written draft blog post) – my age-group “peers” are definitely the hardest. My biggest issue is in not hearing all of the words. I read incredibly well, and can communicate in writing. My brain actually processes language much faster than most people, as long as I’m reading. But the instant there’s any sort of distraction, or I try to hold onto my thoughts specifically, and I miss ONE word, I lose everything. So reading and listening are things I do well. Reading, especially, because I can always go back if there was a door slammed or something of that nature.
And honestly, I don’t think that it’s a “disorder” with either Autistic or NT people. It’s that we speak different languages. We communicate differently. There isn’t one “right” way and one “wrong” way. For me, words carry all the meaning of a person’s message. For others, the person’s message they are “hearing” may not come from the words, but from other nonverbal cues. It’s just a different way of communicating. The difficulty lies in the fact that it’s hard to communicate across those differences.

Hi E, thanks so much for your reply and further insights. I’m reading all your blog posts and every single entry is enlightening, though many are so sad because of what you had to endure growing up, particularly at the hands of your mother. It makes me worry what I’ve done wrong in the name of doing what I think is right but I guess I won’t know until Emma can tell me, which may not be much longer due to her new learning program.

There are a couple other subjects I’d like to discuss with you if you have the time / inclination. I’m a writer and am finishing a Young adult fantasy novel called The Dream Palace. I’ve written a previous novel called The Book ok Paul that is a dark (though humorous and very adult) supernatural/ occult thriller. I wrote The Dream Palace so I’d have something my son Nic could read before he turned eighteen — and now that Emma is learning to read, she’ll be able to read it too! Even though my wife Ariane and I created emmashopebook.com to document her journey, The Dream Palace was my way of processing what was going on emotionally with me and our family. Anyway, this is all a long-winded way of asking you a simple question: What are your dreams like?
There is almost no research I’ve been able to find on studies or surveys of dream content of autistics, so any enlightenment I can get from you and your autistic followers would be greatly appreciated.
Secondly, could you tell us more about your experiences with bullying? I’m the founder of a program called Milk Rocks ad we put messaging on the side of milk cartons for schoolchildren. We will be sending literally billions of milk cartons with anti-bullying messages out to K-12 schools in support of the Kind Campaign, and Stop Bullying – Speak Up, so once again I’d love to get more insight into bullying experiences of autistics.
Lastly, if I’m going to write long letters like this would you prefer to correspond one-on-one via email or should I continue to post here?

Hi Richard! First off, I love fantasy – it’s my favorite genre. And in terms of dreams, I have them. Often the ones that I remember are incredibly stressful. But they are nearly all very obviously parsing my day’s events. I rarely have dreams that are “out of the blue” or super strange. For example, when I was 7, my mother explained what the bulkhead in our basement was for to me – how if there was a fire and I needed to get out, that was the escape route. For weeks afterwards, I had dreams where I was stuck in my house as it burned down around me, and the only way to get out was to get to the basement (which had wooden stairs to get down to, which were often on fire), to get out the bulkhead. I have a major fear of fire now, which also stems from the fact that fire alarms can send me into full shutdown/meltdown mode purely due to their sound. I can sometimes control my dreams, especially early in the night. I remember dreams very rarely, though.
And let’s move the longer conversation to email – I’m better at answering points via email. My email is in the “about me” – thethirdglance AT gmail DOT com
And lastly, thanks for reading my archive! I love it when I hear people have done that.🙂 I tend to do that when I find a blog I like (though I’m shamefully behind right now) – you’ve probably already learned this because you read my “blog reading confessions” post.🙂 So thanks!

I teach special education at an elementary school and you just helped me understand what some of my students think and feel when they appear not to be involved in the here and now. Thank you for broadening my horizons in such an eloquent way!

[…] I have become much more aware of Emma’s sensory issues in the past few weeks from reading other blogs written by autistic adults. I have certainly been aware that Emma had to deal with a sensory overload, but how that manifested itself, what that actually meant to her was something I had trouble understanding. But reading what it’s like for some other autistic people has been enlightening. This is one of my favorite posts on the subject of language and words. It is written by E. who has a blog – The Third Glance. The post is entitled – Words. […]

[…] a prime example of how conversation works for me. Please, if you haven’t already looked at it, my Words essay shows another example of how I process verbal language in situations with a little bit more sensory […]

This post reduced me to tears. I could feel myself getting upset by halfway through and by the end I was a mess. My son is 11 yrs old and I have watched him struggle to create his own sentences and get his words out now for years. I know he shuts down more in noisy, unfamiliar environments. I see how he whizzes through maths questions and struggles with language so badly. It breaks my heart to read your account of struggling with this because I know this is the same struggle he faces. Thank you for so eloquently expressing this for parents like me to read. It gives us more understanding that allows us to help more effectively.

You are a fabulous writer. I hope he is able to express himself so beautifully in the years to come.

Hi Tara,
Thanks so much for leaving a comment.🙂 I know it’s a little silly, but while I struggle in some ways, my life isn’t defined by those struggles. If anything, being aware of how they affect me has made them less. My life is defined by my strengths and doing what I love to do. Also, math is much more fun than language anyway! (for me, that is…) I’ve only very recently become an articulate enough writer to be able to write like this. In high school, not 5 years ago, my writing was terrible! It just takes time and patience and a lot of practice. Thanks again for the comment, and thank you so much for reading.🙂

[…] I have become much more aware of Emma’s sensory issues in the past few weeks from reading other blogs written by autistic adults. I have certainly been aware that Emma had to deal with a sensory overload, but how that manifested itself, what that actually meant to her was something I had trouble understanding. But reading what it’s like for some other autistic people has been enlightening. This is one of my favorite posts on the subject of language and words. It is written by E. who has a blog – The Third Glance. The post is entitled – Words. […]

[…] extremely personal posts, since I am very curious about what goes on in other people’s mind. This is one of my favourite posts ever, describing how a normal conversation feels to someone with mild […]

Hi E, I found your blog thanks to the blog Emma’s Hope Book, and I am so grateful that I did. My son is 5 and has ASD. I’ve always known that he is intelligent and that he is “in there” and that his auditory processing is exactly how you describe it, a few beats delayed. And I know that it causes him to feel inadequate, which causes him to shut down. I just feel it. I’ll ask a question or someone will say something, and he’ll comment 5 or 10 minutes later. Then he’ll look around, look confused, and just withdraw into his own world again.
Reading your blog gives me confirmation, and gives me a peek into what might be going on in his head. As a parent of an ASD child, I always have had this wishful thinking, if I could only see inside his head for a few minutes so that I can understand him better and maybe help him. You have been so brave to share your thoughts and experiences. You are helping a lot of parents understand their children better, and hopefully not make the same mistakes in the past. Once my son’s therapist did a feeding program for my son, and made him sit at the table for 90 minutes, to try just one bite. After much crying from both of us, I had to intervene and put a stop to it. I will never again let a “professional” tell me what is right for my child, when my instinct tells me its wrong.

Hi Shiri, Thanks so much for your wonderful comment. I definitely feel like I’m lucky, I can, sometimes, describe my thought process. And It’s wonderful that when I do, some people are able to better their lives and the lives of loved ones in some tiny way. There is a logic to everything I do, usually not the same logic that non-Autistic individuals have. But I feel that it is super important to, when possible, give insight into that logic. Because everyone’s mind works a little differently. This is just how mine works.🙂

Your description of your son at the table for 90 minutes reminds me of dinners at home – my parents would make me sit until I ate whatever they had served… sometimes for many hours on end.

Thanks not only for this great post, but also for linking back to it in your post about talking hands so I found it. My son has a genetic condition which doesn’t yet have a name, and included in his symptoms are some autistic traits. He can’t explain to me what’s happening in his head. Your words help. I hope they’ll help me in how I react to other people as well as my son. Thank you x

[…] E. describes her life, her passions, her studies, while detailing her thought process while socializing with friends during an afternoon at a café or memories of growing up with abusive parents who didn’t […]

Thank you so much for explaining this so clearly. That was the most insightful blog i have read on autism so far – and i have read many I’m excited to read the rest of your posts. Thank you so much for taking the time to share. Anything that helps me to understand my son is a blessing. Xxxxxxx

Thank you, that is an amazing post.
The words. The sounds of the words. The sounds of the sounds, how they sound, rhyme, jar, stumble, tumble and bump into other sounds. And the smells all around? I can smell so many things, and it is too bright and confusing and overlapping jumble of smells, thoughts and memories triggered by smells, and there goes the thread of the conversation again…

My, this was inspiring. I wanted to comment and let you know that I’m currently writing a play about autism, (I’m a senior in high school), and I’m going around asking moms, dads, anyone, for stories and words of advice for the play. Although these words are your own and I don’t plan on using them in my play, you’re still helping me to tell my story. I’ve noticed that although medical definitions tell you something about autism, they’re merely one-layered and lack the humanity that stories like yours have. So I wanted to thank you for helping me in my creation of something deeper. If I could ask one thing, would you mind helping in one small aspect of my play? I’m including a scene at the end that uses the names of real people that I’ve met through blogs and online, (with their permission of course), and a single word that they’d use to describe either autism itself, (from their own or their child’s perspective), or one word to describe their child or themselves. It’s an artsy approach that I wanted to include to illustrate the realness of these situations, regardless of the fact that the rest of the play was a made up story with made up characters, developed to tell a story. I thank you so much for your hope and for your bravery. I’ll remember you as I write my play and need motivation to make someone proud.

Thanks for your comment.🙂 Unfortunately, you cannot use my full name (I blog anonymously for a reason), though if you wanted to use “E”, that is totally fine. (My word would probably be “passionate”). Good luck with your play, it sounds spectacular.

a thousand times, thank you for this. i’m adding it to my post under further reading because .. yes. and thank you. i know i said it already. i don’t care, i’m gonna do it again. thank you. oh yes, i did.🙂

Thank you so much for this. I found you today through A Diary of A Mom. I’m an NT mom of a 6 year old son who has PDD-NOS and is highly verbal. But I know that he thinks differently. He can’t yet describe his experience, but reading things like this help me try to look for clues as to how he’s processing the world, so I can communicate better with him, and so we can work together to figure out ways to make it easier for him to function in the world and understand it.

May I link to you on my blog? (walkinontheedge.wordpress.com) I just started it and am trying to incorporate autistic writers in addition to parents of autistic children.

Thanks so much for sharing your insights.I am the proud mother of 11 year old autie/aspie Marti and have been able to understand and reach him by studying and opening to the way your brain functions. I am fascinated . Definitely the world wouln{t be the same without your perceptions.

[…] navigate the social minefield of the December Holidays. I wrote one of my all-time favorite pieces, Words, on the airplane ride back home, on a tiny little notebook (one of those 2×4 spiral bound […]

I remember so many times I’ve been thought amusing when I come up with a seemingly “non sequitur” comment as my only contribution to a group conversation.
And this describes very much the process that would lead to my so-amusing outbursts.
As well as the ones people would call me rude for, instead of “Oh you’re so funny.”

Reblogged this on Long on Language: A Speech/Language Pathology Private Practice and commented:
I feel privileged to have the opportunity, through this blog, to understand what is going on in the mind of someone with autism. If you live with autism maybe you know, but if your child is not as verbal maybe they aren’t able to verbalize thm the better able we all are able to interact and understand what they need. It’s not enough just to know a particular program you have to understand the person.